About KrabbeConnect
Founders, Stacy Pike-Langenfeld and Anne Rugari, formed KrabbeConnect, a 501 (c)(3) in 2017, to bridge the gap between Krabbe disease science and patient knowledge.
The idea for KrabbeConnect originated from the 2015 Family Centered-Krabbe Translational Research Network meeting (FC-KTRN), a collaborative meeting between researchers and families to aid in solving the uncertainties of Krabbe disease. Through KrabbeConnect, the foundation provides a platform to amplify the voice of patients, aiding researchers and drug developers in accelerating research for better treatments for Krabbe disease.
Learn More about KrabbeConnect
KrabbeConnect’s dedication and efforts will advance research, provide family support, enhance education, and raise awareness, one step at a time. The organization will encourage patients, caregivers, medical scientists, clinicians, industry, and the government to work together quickly to assure a better life for patients. KrabbeConnect believes advances are made when we align ourselves with the same goal, improving the quality of life of those diagnosed with Krabbe disease.
We encourage you to learn more about us by understanding our Mission, Vision, and Multi-Center Approach here. If you have questions or want to connect with us, please Contact Us. We would love to hear from you!
#krabbeconnect thanks Dr. Jim Wilson for his work in rare diseases and looks forward to learning more about how his company, Gemma Biotherapeutics, can help bring gene therapyA type of therapy that offers hope and promise for a cure for many genetic disorders. A working copy of the gene replaces the non-working copy of the gene. Gene therapy is at the forefront of many to #KrabbeDisease. ... See MoreSee Less
0 CommentsComment on Facebook
We have entered the month of #RareDiseaseDay2025. To get us started, we’re sharing about a Rare Disease Day event at the University of Minnesota. Our President, Stacy Pike-Langenfeld, has been invited to be a panelist. We sure would like to see some families impacted by #krabbedisease in the audience.
Use the QR code to register. It’s free to attend in person or virtually! Comment if you plan to attend ... See MoreSee Less
0 CommentsComment on Facebook
The United LeukodystrophyThe leukodystrophies comprise a group of progressive, genetic disorders mainly affecting the central nervous system (CNS). Most leukodystophies result from a disruption of the growth of the myelin sh Foundation and KrabbeConnect are partnering again to bring you the latest information on #krabbedisease. Last year more than 40 individuals impacted by #krabbedisease gathered to learn, discuss, and network. Take a few minutes now to apply for a scholarship through #ulf here - ulf.org/2025-family-conference-scholarships/
DEADLINE TO APPLY IS FEB 14TH!
We can't wait to see you all this summer to discuss the next steps to #curekrabbe. ... See MoreSee Less
0 CommentsComment on Facebook
Announcement - Forge Biologics closes #KrabbeDisease program.
There are no words for this type of devasting news and #krabbeconnect has little insight as to the “why” except for the information provided in this letter. 💔
To the families - we know this is heart-breaking and we are here for you. We will all need time to absorb this information but #krabbeconnect is not giving up the fight to #curekrabbe ... See MoreSee Less
8 CommentsComment on Facebook
My heart hurts. I feel for those that were in these studies, those hoping to be included in the studies, and all in the Krabbe community.
Devastating. Is there any other company still looking for a Krabbe cure on a larger scale?
How insensitive for Forge to notify participating families (ie children.) of their cessation to gene therapy for Krabbe children by a Facebook post.
Load More
Great news to start the week! We look forward to more states adding #KrabbeDisease to their #newbornscreening panel by the end of 2025. Stay tuned for more details to follow on #Utah. ... See MoreSee Less
0 CommentsComment on Facebook
We want your opinion! If you didn't receive our survey, email us at info@krabbeconnect.org and we will be sure you get it. ... See MoreSee Less
0 CommentsComment on Facebook